A journey of life with Deafness,Cochlear Implants and a mitochondrial condtion.

Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story

28 August 2008

As you can see my dietician appointment didn’t go well!! :0( Although my weight is still 8st and a half at the moment, it was disappointing that my dietician felt it’s not good enough for me to drop another day of the feed yet and the possibility of getting rid of my PEG altogether is slipping away. I felt so bad about that that I cried and made a fool out of myself. My dietician told me I still need to try and experiment with different foods and get a more varied diet before they would let me off the PEG. Of course I was proud that I’d kept the weight on and I look better but I feel it’s not my hard work, it’s the result of the PEG giving me all the vitamins that my body needs! I was disappointed that I couldn’t drop off another day off the feed from 3 days to 2 days.

But it’s hard to think that I can change my ways after I’ve spent most of my life eating the same foods that I have done & that I choose foods that I can chew and swallow more easily. I thought I would at least get my PEG taken out next year sometime but it seems that might never happen at the moment…

I’m just feeling a bit sorry for myself at the moment and that I can’t try harder than I already I am, I already have other things to deal with like my OCD and my other hospital stuff, that it’s just making my head explode! I just let it all out in front of the dietician and my mum. I felt a bit stupid about everything but they both reassured me that everything would be fine and I’ve done so well to get to this point. I suppose I am proud I have put the weight on and gone through the entire hospital journey but when will it get to the point where I’m going to be happy to be my relaxed self again and don’t have to have any anxiety attacks. I hope I’ll be ok and I’ll get myself back to tip top shape! Anyway that’s what I hope!! It may be hard to get through it all but I’ll do my best! After all, there are worse things that could happen. I feel very lucky to have my family around me at the moment.

27 August 2008

I’m worried about my dietician appointment tomorrow because what with all the bad days I’ve been having, I fear I’ve let my routine go and lost some weight. I’m trying my best to stay above 8stone but I think it’s gone down. I’ve not weighed myself for a few weeks because I can’t trust our weighing scales as they gave a different reading each time and I didn’t know which one was right!

I worked hard to put all my weight on since I came out of hospital last year and I have put on an amazing 2 stone from 6st to 8st and looking more healthier which I’m pleased about. I don’t really want to lose that look because I love my body how it is now and I would hate for my skinniness to come back. Everyone that I have spoken to has told me how good I look now and I don’t want to disappoint them by dropping some weight as well as myself.Although I know my weight won’t drop if I keep on eating small portions often and I have the PEG on bad days when I haven’t had a lot to eat but I worry that I might not come off the PEG unless my dietician is happy for me to do so.

I worry about a lot of things and want things to be good again so I can be happy and relaxed just as I was before my OCD took over and its one less thing to worry about if everything is fine tomorrow. Just gotta keep fattening myself up! Ha

25 August 2008

Today, I am feeling extremely weak and I’m laid up in my cosy seat trying to keep my head up as I write this. Every now and again, I have to relax and rest my head on the top of my seat to take the strain off my neck. I hate days like this because I can’t do anything without something hurting because I’m just exhausted and weak so I spend a lot of time in my chair trying to regain my energy. My OCD is no help either because it makes me feel a bit crap about myself and having to get things perfect before I can relax. I was in bed till 12pm today and when I wake up, I know if I’m going to have a good day or a bad day. Think of it as spending all day at the gym doing weight which means you can’t move for days afterwards! I don’t know how long it lasts for me. It can be a few days up to 2 weeks and I always feel very helpless during these times and I rely on my family a lot. My mind feels exhausted too so I’m always tired and just want to sleep but I can’t because I’ve just got up! I spend a lot of time stretching out my legs and my arms etc when I feel like this to keep my muscles moving

24 August 2008

I went to a housewarming tonight and I played the Wii once again! It’s really good fun and good exercise too! It gets you up to play games such as table tennis or bowling, as it requires you to be standing to be able to get the points! Even if I went to the gym which I don’t, I would give it up because the wii gives me all the exercise I need!!!! I’ve asked my parents if they could maybe get me one for Christmas and that maybe I would put some money towards too, I think it’s worth the money! After tonight, I was well and truly knackered after playing it and I might well get some early nights since I’ve been staying up late a lot these days. I hope I’ll be able to get one for myself and keep myself occupied during the day as well as get some exercise too! I get very bored when everyone in the family is out at work during the week and i resort to sleeping in most of the day to sleep through the boring times! With winter coming, I won’t even have to go out for a walk in the FREEZING cold when I feel I’m getting a bit weak. I bet my family would have fun playing it too ha-ha!

Although I had a good time at the the housewarming and was great to see friends, I couldn't help but still feel a bit left out as everyone talked over their drinks and the music drowning out everyone's conversation. I have always emphasized to my friends that i can feel a bit left out in group situations due to my deafness but it gets overlooked. I know they don't mean to make me feel left out but it always seems to happen. There's always a moment when a mate that asks if i'm alright and I always end up nodding yes to not ruin everyone's night by my moaning! I'm not critising my friends as most of the time, they are a fantastic bunch but I just wish they would be more aware about my deafness amongst the loud music or group talking etc..

My house is very quiet without my brother as he is at the Leeds Festival and as much as he annoys me most of the time, I miss him! He always makes me laugh when I’m down, anyway he will be back soon with tales of his adventures!

21 August 2008

I had my annual review at the Yorkshire cochlear implant service today and it went well apart from the early morning start because my appointment was at 10! It takes us about half an hour to drive there down the motorway to get there.

As I was saying, the appointment went well and my audiologist, Salim tested my external part of the cochlear implant and looked in my ear for the internal part. Everything was good thankfully! My cochlear implant was tested too and the sound levels were fine. Salim also told me that there's no infection in my right ear now, I probably still won’t believe it though because I’ve had it for so long! I’m sure I will one day and will feel I can finally touch my right ear again without worrying I’m going to pass it on the left one!

We also talked about the possibility of upgrading from the 3G Esprit to theNucleus Freedom. I was unsure about the choice to upgrade to the Freedom because I don’t really want to go through the whole programming the external part of the cochlear implant again after years of getting it right! Salim told me and my mum that the Freedom was still in the testing stages. He also told me that some people have had some trouble adjusting to the Freedom after having the 3G esprit because they think it sounds different. I already knew it would sound different at first, I was expecting that! I wondered if it was worth the hassle switching to the Freedom.

Salim was saying that because my internal cochlear implant was not the same as the one that most implantees get now when they have their operations as it has been upgraded therefore if I did decide to get the Freedom then some of the features on it wouldn’t work. To be honest, I wouldn’t really care about the features as long as I could still hear well & able to listen to music and family!I decided to stick with the 3G esprit for now, although Salim told me eventually, I would need to change to the Freedom because as time goes on, technology changes too but I will cross that bridge when it comes! For now, I am quite happy with my 3G esprit and I got my batteries and a magnet coil for my cochlear implant and off we went home!

Here is a video of some of things I have made over the last few years...

Some are from college and some I made at home because I got bored...Theres never much to do and my mum bought me a latchhook rug set to make to keep my mind busy! Making a latchhook rug takes patience! The ones I have made have been done over a 3 month period as you have to hook every wool strand with a tool on to a net background to get the pattern looking right. Of course I did have instructions!! I'm always relieved when they are complete though because hooking the strands of wool starts to hurt my arm after a little while so i always used to do a certain amount a day. The elephant blanket was made at college as part of my marks on a creative studies course. I love it and use it a lot to snuggle up with!

17 August 2008

I had been feeling a bit weak last night with my body feeling a bit stiff and heavy when I had a few friends over to celebrate the aftermath of my birthday. I was wondering whether I would be ok to be entertaining my friends when I am like this but I had a brilliant time despite one or two friends not being able to make it! My friend brought her Wii over for entertainment and I aced the bowling game! I got 5 strikes and won!!! Not bad for a beginner! We also watched X-factor and played UNO.

I hate my body feeling like that although, I never know how long it’s going to stay like that, and it can be a few days or up to two weeks. I don’t know what causes it. My mum thinks its stress when i'm worrying about something. I didn’t even wash my hands that much either when I had my friends over! There’s something about having friends over or seeing my friends that makes me a bit more relaxed about things. I don’t know why I can’t feel like that when I’m alone or when I’m with my family, maybe it’s because my friends don’t fully know how bad I can be with my OCD and I don’t worry about them snapping at me about it like my family do at times.It was nice to have a relaxed evening and enjoy myself.

The only bad thing was yo yo ing to get up and play on the Wii and get drinks etc because it takes quite an effort to get out of seat when I’m stiff and heavy. I just feel like a dead weight when I’m trying to get up, my legs can feel incredibly weak and could easily give way if I didnt eventually get on my feet or sit back down again! It can be quite a worry for my mum when I’m like this because she worries whether my legs will give way when I’m going upstairs or in the bath and knock myself out.

I wonder if I’ll ever be able to live independently if I can’t cope with living on my own because it seems to me at the moment I always need someone around to help me with things.

16 August 2008

I was reading the Cochlear Kids blog and they have a post about their kids sleeping without their cochlear implants.

I, for one love it! Even since I was born, my parents told me that before they discovered I was partly deaf, I would often be asleep because no noise ever woke me up. Every now and again, they could take me to the local pub in my carrycot and enjoy their drink and I would sleep through the whole buzz of conversation and classic pub songs.

I love how I can sleep through the night without my cochlear implant. It’s nice and peaceful. Nothing like the occasional traffic on the road outside my window or heavy rain to wake me up, I can keep my window open all night much to the envy of my mum! When it does rain (which is nearly most of the time!!?) I love to watch it even without hearing it. I can also watch my TV in bed with subtitles too!

What with my PEG pump, it beeps really loudly when you switch it on, if the pump is on hold and when the feed is finished so I appreciate it that I don’t hear it in the morning when it goes off and my mum turns it off and flushes my PEG with water. It’s a sound that will make you cringe! BEEEEP BEEEEP BEEEEP!!! Thankfully, I'm only on 3 nights now as setting up the pump and the feed is beginning to become a chore, it's so heavy to drag the pump while attached to my PEG up the stairs to my room that I’m surprised I don’t have bigger arm muscles!!!!

Another thing me and family love that I can sleep through anything without my cochlear is when my family use my computer that’s in my room because the tapping of the keyboard or the buzz of the PC doesn’t wake me up. I could literally have a bunch of people in my room talking and I would not know about it which makes some people jealous! There could be plenty of things I wish I could hear but I wouldn’t change the fact that I am profoundly deaf with a cochlear implant for the world!

There is one bad side that I sleep without my cochlear implant on which is I never get up when I would like to. I have a choice between someone waking me up or sleeping in! I would like to be able to get up for an appointment if needs be like when no one is around such as my family are working. I have tried vibrating watch alarms but it doesn’t always wake me up because the vibration isn’t strong enough. I also tried an under the pillow vibrating alarm clock but it was uncomfortable to lay on with normal pillow so now I’m looking for a good portable small vibrating alarm clock which I can now have because I use triangular pillows. If anyone knows where I can get good one for a good UK price from, please let me know!!!

15 August 2008

Tonight, on my birthday (14th), I broke down in tears in bathroom while washing my hands… I just felt so angry with myself that I feel have to rely on wash my hands to feel better about things. Today had been such a good day for my birthday and for it to end like this, it kind of upset me. I really don’t want to feel forced to wash my hands to feel better,more content but this compulsion just overwhelms me and I give in to it most of the time. I try and force myself NOT to do it but it’s so hard! I want to be able to relax again and not feel the need to wash my hands anymore. I’m constantly like a yo-yo these days getting up to wash my hands and I miss out on a lot of things such as my favourite programmes I’ve been waiting to watch or maybe a DVD I’ve put on and I want to relax, watch the whole thing through without washing my hands.

I get very annoyed at myself the fact I feel I HAVE to do it but I know I don’t need to! My parents constantly tell me I don’t need to be doing these things and I know they are right, I hear it but It doesn’t go into my head! I just have all these things going round my head, say I see a outside dustbin I think “dirt” therefore if I touch it or even THINK i've touched it, I will need to wash my hands or even change my clothes. I can’t explain it but I want to get rid of these thoughts before it ends up ruining my life existence and I don’t want to put my family through any more stress. I know it upset them to see me like this because it’s so frustrating for them to keep telling me that everything is ok. I know I have to cope with these things because there are everyday things like emptying the bins that need to be done. My family often snap at me because I’m bugging them with my constant questions. I need to conquer this thing before it takes over my life even more and that I might just end up in a bath for the rest of my life!!!!

I really need to do something with my life that’s going to keep me occupied enough and happy enough not to wash my hands but first I need to get rid of the compulsions that make me want to wash my hands in the first place. I just think if I carry on like this, I’m never going to be happy or be able to cope with anything! It’s not helping being at home most of the time but I know I can’t get a job because there’s no way I’d be able to cope with one with my disability. Right now, I’m relying on my family a lot more than I should be when they should be enjoying their time on their own and I just feel so bad that I’m the cause of that. I know they love me and they want me to get better but that’s easier said than done. I’m just sick of crying to my mum about it and it’s going to make me an emotional wreck unless I sort it out and I’m no good to anyone like that…

13 August 2008

Since I have got my cochlear implant, the greatest thing I have loved listening to is my music. I have several favourite songs and I can’t choose amongst them! So, I’ve put a few links on for just a few of my favourite songs at the moment...

10 August 2008

The Ear Trust is trying to raise money for the Listening For Life Appeal and hopes to provide a new home for Yorkshire Cochlear Implant Service in Bradford UK. I for one will be supporting this appeal as I am grateful for the chance to hear again. I would love for the YCIS to make it possible to give more deaf or hard of hearing adults and children the chance to learn about cochlear implants & to hear again. The Ear Trust hopes to raise £2 million to build this new centre which will give a greater chance of helping more people. I will look forward to seeing this new centre in 2009.

If you think you can help in any way to raise money for the Listening for Life Appeal, please go Yorkshire Cochlear Implant Service website (YCIS) to find out more. The will send you a CD with what exactly the cause is for and how you can help.

17. What I miss most about the Eighties is: a world where children could go out and play in the streets without the worry of ASBOs, violence and guns.

18. If I were a character in Shakespeare I’d be:Juliet from Romeo and Juliet because i'd be in love and have our little world because you love each other and dont worry about the love/hate situation between the families.

19. By this time next year: I hope to have the possibility of getting my PEG removed.

A better name for me would be: Trouble

21. I have a hard time understanding: why people are malicious and vindictive for no reason, bar their own envy. It’s petty

.22. If I ever go back to school, I’ll: make sure that there would be no bullying because bullies are cowards and needed to be stopped in their tracks.

23. You know I like you if: I talk to you a lot, and ask lots of questions and also be a bit giggly.

24. If I ever won an award, the first person I would thank would be: my parents. I’m grateful every day to have the luck and honour of being their daughter and they looked after me so well when i went into hospital many a time.

Tonight I had a conversation with my parents about my PEG and the things that come with it. I worry that I may need my PEG in the long term rather than the short term. Obviously my dietician wouldn’t let me off the PEG till she is sure that I can maintain the weight I have at the moment. I don’t wish to keep the PEG the rest of my life but I need to show my parents and my doctors that I can be able to keep this weight on. I do worry that once I am off the feed full- time that I will start losing the weight again which is exactly what we don’t want to happen! Over the last year or so, I’ve gone from 6 stone to 8 stone and look much better for it. I don’t want to go back to the skinny person that I was and the PEG can be a good thing when I’ve not had much to eat during the day but I don’t want to feel I have to rely on it to keep my weight maintained.

I love my body as it is now and has made me confident and happier at how I look at my body. As I am a fussy eater, it’s not that easy to change the habit of a lifetime! I often have to be reminded by my parents to eat as I spend a lot of time on the internet and can forget to take time out to get something to eat. I hope that I will be able to get into a routine that I can eat regularly and maintain my weight or maybe put some more pounds on. Just as long as I don’t go back to the skinny person that I was because I hated it and the way people commented on it. I know I did look awful and skinny at the time but my condition affected that and I wasn't having the right nutrients. I will hopefully learn to try new foods now and again after spending most of my life eating sandwiches and easy things that I could swallow. Although I’m not ashamed of the fact I have a PEG but at some point I would like to have it taken out and have a normal natural body without this freaky contraption coming out of my stomach! I think it’s important to have a sense of humour about these types of things as taking it seriously would only make you feel a bit depressed and sorry for yourself.

6 August 2008

I am not looking forward to the winter months when it becomes cold because I also have Raynaud's syndrome too. When the cold seasons come, I find myself constantly trying to wrap up warm and it takes forever to warm up! I also find myself staying in a lot more than usual because I don’t want to go out when it’s freezing which makes me even more bored. I’m sure I’ll keep myself busy with a latch hook rug once again! I will probably live in my jumpers the whole winter months! Although the weight has made a bit warmer than usual, I’m not sure how much warmer it will make me in the winter months. I hate the cold! Even the slightest draught makes me cold! Grr

4 August 2008

I have decided to give cognitive therapy again as my OCD has slowly been getting out of control! It is really beginning to frustrate me and my family because I don’t need to be doing these silly little rituals but I cant help it. Something clicks in my mind and I find my self washing my hands yet again; This time I have opted to go with someone else after the last time I tried cognitive therapy and hopefully this time I will sort it out once and for all! It may never totally go away but at least I can keep control of it and beat OCD. It’s just becoming very time consuming and making me miserable because I want to stop what i'm doing. It is also now getting in the way and stopping me from doing the things I enjoy. I used to be able to touch the things I hate now and it is getting in the way of when I want to go out somewhere with friends or family, but I worry about the things I don’t like and would avoid them. I don’t know how it started or how it got so bad but I want to get back to normal and enjoy my life without worrying about pointless little things.

I just get so angry with myself over the little things such as doing my hair when I can’t get it right and it frustrates me to the point I end up in tears. My family can get angry at me about it too but I know this is because it’s getting on their nerves as well. That upsets me because I don’t want to get on their nerves, I want to be able to have fun and relax like I used to.

3 August 2008

I do feel isolated from time to time being at home most of the time. I do things to keep myself busy like making things. My friends have their own lives/careers so I don’t see them as much as I’d like to. We always take the time to meet up as much as possible. I volunteer one day a week at a special school to get out of the house as I can’t work. I get tired easily and if I had a job, there would be sick days and hospital appointments so I stick to volunteering where I can do what I can on my own hours. I help out on reception doing admin and I enjoy it.

Even being with friends can be hard because I’m deaf and when I’m with a group of friends, it can be hard to follow what everyone is saying. I could be out for a meal with friends and I would be sitting quietly while everyone is chatting because I’m not following what they are saying .The voices come in all directions and I’m not sure which way to look and who to talk to! I try my best to join in at times but I’m better on a one to one basis! It can be hard when I’m in a place that’s noisy too. A cochlear implant doesn’t solve everything yet! Maybe in the future, I’ll learn to deal with it more and my communication skills will get better.

I recently went to one of my best friend's wedding at the beginning of July. It was a brilliant day and I was honoured to share it with her. It was also great to see all my friends reunited again after some had moved to another part of the country or had new jobs. I had a night off from my feed to stay at the hotel that my friend had her wedding reception at. I felt very confident in my 2 new outfits and I didn’t even let my OCD get in my way!

Since Christmas I have put on another stone on and am now 8 stone! I see a dietician for my PEG who keeps an eye on my feed. I see her every couple of months and each time she has been pleased with my progress and has reduced my feed gradually over the months from 7 days a week to 6 and then 5 nights and so on. So far I’m on 3 feeds a week. I do worry that I might lose weight once my PEG has been removed but there's no way my PEG will be removed until I’ve spent 3 months without the feed to make sure I can maintain my weight. Hopefully I will be able to; I just have to keep eating little meals but often and lots of snacks!

What happened last year gave me a lot to think about, how lucky I am and have a great family who support me. I don’t really venture out of the house most nights and enjoy time with my family watching TV. I have a great set of friends who are always there and we can go for a meal or just a trip to the cinema. I hope maybe one day I’ll find a lovely boyfriend too!

2 August 2008

By Christmas 2007, I was 7 stone and getting used to my new body. I had always been slim and never weighed as much as 7 stone in my life. It was a sign that the PEG was working. I was enjoying buying a whole new wardrobe of clothes to suit my new body. I had gone from a size 8 to a size 12.

My mum had wrote a letter to the local paper who were doing a Christmas wish article. The Christmas wish was about people who had a bad year in 2007. She had nominated me to get a new laptop because I already had an older laptop but it was slowing down. She knew I was always on my laptop talking to friends. On a Thursday 2 weeks before Christmas Day, the newspaper rang up and told us they were awarding me my Christmas wish! I was shocked but happy! I never thought one of them would be me because I thought there would be people worse off than me. I had my photo taken for the newspaper and in the next few days I was on a full page spread on page 5! I didn’t think the picture would be that big! All my family and friends thought the picture and the article was really good!

For Christmas Eve, I was going to a meal with friends so I went out with my mum to find a nice outfit. I didn’t think that I would find a dress because I had not worn one for a while because I was always very slim. I didn't realise how much weight I had put on till I started trying clothes on!

I finally found a great dress that suited me and was ideal for the Christmas Eve meal. My friends said I looked so much better with a bit of weight on. I was actually very happy with how my body is and got more confident. I actually had a bust now and felt more girly!

I rested for a few weeks at home and enjoyed the sunshine we were getting. I sat in the garden most of the time reading magazines. I was 6 stone at this point.

In August 2007, my parents took me to Blackpool, a seaside town for a few days to recuperate. My brother decided to stay at home. The last time I went to Blackpool for a few days was after my last intensive care stint in 2003 and we went in the summer of 2004 but I ended up collapsing after walking too much. So from then on, we either took the tram or had a rest between walking.

I had brought my PEG pump and everything that came with it along too as I was still being fed every night. When I was not being fed, I was quite happy to sit in the tea room of the hotel reading a paper while my parents took a break from me or we all went out together. I went to see a show Legends where we saw the impersonators of music artists such as Freddie Mercury & Rod Stewart. I thought it was brilliant and very entertaining! At one point, Freddie Mercury ended up sitting on my lap as part of the act!

I was wheeled into a ward in the hospital, in my own private room. I was now able to view my phone where I had dozens of messages from my friends. I was also very glad to look online on the TV they had at hospital and watch TV too. I missed my internet browsing as I always talk to my friends on MSN messenger.

After 6 weeks in intensive care, I was now able to have my first proper bath on the ward where my mum helped me. I was careful not to get my tracheotomy dressing wet and my PEG site was fully healed up so that was fine.

My parents took me outside for my first breath of fresh air since I went into hospital. They put on my new comfortable dressing gown and they wheeled me out in a wheelchair. It was a nice sunny day and we went to the front of the hospital on the grass and had the nice warm sun on my face. It was nice to get out of hospital after being laid up for so long. I began to walk around a lot more although my PEG pump on a stand had to come with me! The PEG would only be put on over night when I arrived home.

Again, I got bored and fed up of being in hospital, it wasn’t easy watching TV without any subtitles but I felt very lucky to be alive after the near death experience and counted down the days til I was out of hsoptial.

In the middle of June 2007, after a week of being on the hospital ward, I was finally allowed home. With instructions on how to work the PEG pump, we set off home.

1 August 2008

In intensive care, I was wired up to a life support machine with a breathing apparatus down my throat. I’m only going by what my parents told me as it was them going through the experience rather than me as I was sedated most of the time.

The doctors told my parents I had caughtpneumonia and septicaemia. The doctors told my parents that some of the food I ate after the PEG operation had gone into my lungs which set off a chest infection in my lungs leading to pneumonia. My mum also told me that the nurses that told me to eat should have known of my condition and I was too weak to swallow and should have held off eating til I was stronger and fed me through the PEG after all that is what it was there for!! I was seriously ill and was given 24 hours to live at one point. My parents were distraught at this. As I lay in my hospital bed in Intensive care, my extended family was to come and see me in case of the worst scenario that I might not make it.

I made it through the night although doctors were still quite worried about me. I lay in my bed hooked to machines, whenever the doctors tried to see if I could breathe for myself instead of the breathing apparatus. The doctors had to wake me up but I kept trying to pull my wires off myself so they had to sedate me again.

My family was asked by the nurses to try playing music to me so they put my cochlear implant on my ear while I was sedated as they believe you can still hear music when you are under sedation.

After 4 weeks, I was finally able to come off the breathing apparatus but I was still very weak. The doctors were still worried about my breathing so they decided to perform a tracheostomy(A small slit in the throat to help me breathe). There was always a risk it might damage my vocal chords but done right it would be fine. My parents told me this by a note; I was far too weak to be bothered and agreed. With the tracheostomy in my windpipe, I was unable to speak, so the nurses gave me a mini whiteboard and a pen whenever I wanted to say something. My tracheostomy was connected to an oxygen machine which put air through to my lungs. I couldn’t really move with it on and I felt I had to keep my head straight. The oxygen tube came off a few times and I panicked about it thinking something bad might happen. The nurse reassured me that it was fine if it came off. It was hard to sleep with it on and looked forward to having it removed. Although after 5 weeks asleep, I wasn’t tired! I found myself talking to the night nurse for a few nights. He kept trying to get me to go to sleep because it was what I needed to get my body to recover more but I couldn’t seem to drop off. My mum often called when visiting times were over and see if I was ok.

After a few days, I knew what was going around me now. My family visited everyday with news, including the fact that my friends were very worried about me. They had set up a webpage for me with get well messages. I felt very overwhelmed but my friends couldn’t visit me because it was only family and 2 to a bed in the intensive care unit. Although they bent the rules a bit and allowed my best friend Kevin to visit me. I was pleased to see him but I was very tired and couldn’t talk for long.

I had been on some powerful drugs and it gave me some very vivid dreams which seemed so real. One dream was that I had been in the hospital helicopter and was in a different hospital entirely!! (My dad explained it was probably because I saw the helicopter pad at the hospital) Another was that a nurse had cut through my cochlear implant wire by accident. I was so distraught at the idea of losing my external part of the cochlear implant that my parents had to tell me that it wasn’t real! I found it hard to take in that it was just a dream! Although a real incident was that my cochlear implant ended up in the laundry because the nurses had forgotten about my cochlear implant and it fell off my ear while they were clearing my bed sheets. I was not very pleased to hear about that!!

I had my chest drain taken out, it wasn’t very pleasant but it was responsible for getting all that mucus out of my lungs! I still had to find the strength to cough though as that was the natural way of getting mucus out of your lungs. The doctors always kept telling me to keep coughing and get it all out. It was hard though because my chest felt tight and I couldn’t get enough breath in to cough. They also took my catheter out which was a relief because every time I moved, it was pretty uncomfortable and I was now able to go to the toilet properly again!

The whole time that I was in intensive care, my PEG was feeding me by a drip pump. I’m grateful I couldn’t feel the pain after the actual PEG operation. My parents learnt how to use the feed pump while they were waiting for me to come to from my sedation. I even learnt that my brother was very upset and was a rock for my parents.

After talking to my parents about what had been happening while I had been sedated, my dad told me he had won a large PG monkey off eBay because he knew how much I love the PGtips monkey. He told me he was safe and waiting for me when I went back home! My parents also told me they had changed my bedroom around at home, a new bed and drawers etc. I couldn’t wait to see it. They had changed my bedroom because when it came to the point of coming out of hospital, there was no way I’d be able to get up my bunk bed!

The change of bedroom was also to do with my drip feed because when I am on my feed, the wire I am on is not very long and has to reach my bed where I’ll be fed overnight. My parents also had to get a triangular pillow to keep me upright in bed because when you feeding you cannot totally put your head down totally on the bed as you may choke on the feed going in your stomach. I found my triangular pillow much more comfortable than a normal pillow because as I was very slim, my bones used to ache when lying on a mattress as I didn’t have a lot of muscle to cushion it. I could rest my head more easily and be more comfortable to sleep without my arm hurting me.

My tracheostomy was getting better and they could now let me speak when they took a piece off that was connected to it. My voice was very hoarse and I tried to speak with it but it was a very weird feeling like you have a box hanging on your throat. I sort of sounded like a Dalek from Dr who!

Eventually, I had the tracheostomy taken out and I was left with a hole in my throat, the doctors told me that the hole would eventually get smaller and seal up. For now, I had a dressing on it. It started at the size of a 1p penny. I could feel the gaping hole in my throat but with the sealed dressing on it, the hole was completely fine and would seal up and leave a tiny scar.

My tracheostomy scar

I was bored a lot of the time I was awake so the nurses gave me a TV to watch and I watched Big brother and watched the contestants going in. I had good chats about big brother with the nurses who I liked and who I wanted to go etc. The intensive care nurses were really friendly and took good care of me. I got to know them well the 6 weeks I was in intensive care.

When it came time to start getting out of my bed to walk about, I was very dizzy as id just been laid up for 5 weeks. I had a physiotherapist help me get out of bed, at first it was just walking a few steps to a seat for the nurses to change my bed covers. I didn’t like this because once I was sat up, my chest felt tight and I felt like a heavy weight that only those few steps really took it out of me. As time went on, I began to use a crutch with wheels on it and I would hold on to it and began walking even further. When I got bored, I sometimes felt well enough to go to the hospital shop, although in a wheel chair. I also ventured to the cochlear implant unit and said hello because they had been worried about me!

June and 6 weeks of being in intensive care, I was well enough to be moved to a normal ward. I was very happy about this because it meant i was getting better and soon i could go home!

I went for a pre-op, I had the usual tests and the surgeon doing the operation told me the ins and outs of it all. He also showed me the PEG that would be going in my tummy! It looked so long but the surgeon told me half of the tube would be in my stomach.I was really worrying about it now but my mum always assured me that when I put some weight on ill feel a whole lot better!

I went for my operation on 3rd May 2007 not exactly looking forward to it! I came with my mum to the ward feeling very hungry because I was fasting before the operation.The nurse took my details and the nurse showed me to my bed, I stayed there for 2 hours before it was time to change into my gown and go down to theatre. I had asked to be put to sleep by gas first before they put my cannula needle in my hand as I was so terrified of having it after having so many operations.

The operation overall went well and I was back on the ward. Surprisingly I didn’t feel any pain but I was feeling very weird and drowsy. In the ward my parents and brother were at my bedside and I couldn’t focus on anything, I was nipping my parents and brothers hands for some reason. I began to bang on the hospital bed bars too, I’ve no idea why! The nurses encouraged me to eat because i was still eating orally. I tried to eat some mushy banana and some yogurt as well as drinking orange juice.

After 4 days on the ward, during the night I texted my mum saying I felt unwell so she came in early the next morning. When she came in to see me, I was having trouble breathing, and mum rushed out to get a nurse.

The nurse saw me and told my mum to stand out of the way. They sent in a crash team in and they put me on life support. They inserted a chest drain, a catheterand all the necessary wires including a tube down my throat to help me breathe. As I kept pulling out my wires they had to sedate me.